Looking forward

Lots to blog about but for this time I thought I'd bring everyone up to date on my visit with my neurologist last Thursday. Shel and I had been quite suspicious of my three major 'spells' being an overdose of the Sinemet that I take for my DRD, coupled with the fact that I had just eaten a high protein meal before taking a pill. Protein interfers with Sinemet. To make a long story short, I had begun to decrease my Sinemet after the third spell and by the time I saw my neurologist I had myself down to 1/2 of a pill taken one hour after eating my breakfast each day. Sinemet is a medication that must be started gradually and weaned off of slowly. As I had begun to notice an improvement in how I felt, and had not had any more major spells, he wants me to stop taking the Sinemet completely and come back to see him in two months time to see if he can detect any difference at that time. DRD is an extremely difficult disease to diagnose and treat, and the information on it, though improving, is really minimal. Many, many doctors miss it completely . . . . even specialists. They simply don't understand it; especially if they've never seen it before or studied much about it. I am extremely blessed to have a neurologist that is very keen on movement disorders. If any of you would like to read more about the various types of DRD, or find links to more information on Dystonia in general, check out Dopa Responsive Dystonia Central or
Dystonia Medical Research Foundation . Ironically, my neurologist tells me that it is possible that with my particular type of DRD, which is the Segawa's variant and is hereditary, in my case it may be that I have grown into it over the years, required help rising the dopamine level, and that I am now growing out of it (in a sense), which means that I may no longer require Sinemet to up my level of dopamine. Or, it may be that I require a lower level intake of Sinemet. That remains to be seen. I still have the disease. There is no cure. The Sinemet simply helped to control my symptoms. I have been off Sinemet since Thursday now and so far, so good.

The other symptoms that I had been experiencing which don't really fall under the umbrella of Dystonia, would appear to be stress-related, menopausal, and what one may experience if one tends to live life as a 'worrywart.' I am working on those and with God's help, and that of my DH and children, I will be moving forward one day at a time.

One word of advice that I do have for anyone that doesn't seem to be getting answers from their doctor . . . . find one who will listen to you. I did, and it has made all the difference.

Take care . . . .